Secrets

[NDR2]

We all know that we’re on the spectrum, and there are probably other people we know who also know that. But there are probably other people we know who we keep it a secret from in order to protect ourselves – from ableism, rejection, mistreatment, or maybe even embarrassment. We probably have certain tactics we use to keep people from finding out. At the program for people with learning disabilities that I attend events at, they sometimes take group pictures of the participants to put on Instagram. But I avoid being in those pictures. It’s partly because I’m camera shy, but mainly because I wouldn’t want the wrong people to see them. Sometimes I host virtual games with friends, and I invite both friends on the spectrum and neurotypical friends who don’t know. Beforehand I’ve told my spectrum friends that there will be NT’s there and ask them not to say where we know each other from. When some program I’m part of and going on a trip or outing, if people who don’t know I’m part of them ask what my plans are, I’ll tell them truthfully what place we’re going to, but I’ll say I’m going with friends (which isn’t a total lie).

My speech therapist and I recently talked about this, and she suggested that even though I intend no harm by my actions, I might actually be hurting people’s feelings by refusing to have my picture taken, or making them feel rejected by asking them not to mention the programs. She says I should think about my friends and not just about myself. It’s possible that some of my friends are actually proud of being autistic and feel like they have nothing to hide. Some may also have been in such programs all their lives that they don’t see them as stigmatizing or infantilizing. Certainly I do want to consider my friends’ feelings, but having been through lots of hardships throughout my life, I’m often inclined to play it safe and avoid conflict when I can.

Any thoughts?

 

[marc_101]

Hmm. I see the speech therapy's point. Maybe the best approach is to ask your friends what they think about it. Explain your thoughts but also ask their opinion. They already know because you asked them to not mention how you met. So ask them how they feel about it. The way I see it, you don't lose anything by asking them.

 

[MNAus]

I think the speech therapist is overplaying the harm to be honest. I don't think people will really have hurt feelings from photos being refused or will be hurt by you asking them not to mention where you met. Mildly confused? Maybe. Hurt? Probably pushing it. That said I wouldn't be happy being asked to lie about things for someone, and that doesn't sit well with many autistic people.

 

[Jumpinbare]

I was very demanding of myself growing up and especially in adulthood. As much as I never wanted to be noticed, I figured if a group was worth my participation, then they were worth my admitting I was part of them. So I didn't hide my participation, nor did I shout it from the rooftops. If someone mentioned seeing me at an activity with a group, I didn't deny it.
Mind you, in my life, I've only been involved in 3 groups. And I was generally in a quiet corner or otherwise on the edge of the group.

 

[WhitewaterWoman]

I think you have the right to make choices about whether or not a photo or name or article or whatever is made with or without you. End of story.

The speech therapist's advise, I think, was to help you being "more normal."

 

[Seladon]

Thanks for sharing, this is food for thought. Your therapist sounds a bit touchy about it, however she may have a point about considering how the refusal is coming across.

As someone who also ducks photos and compartmentalises social life (fear of exposure is fun!), now I'm wondering whether NT friends & acquaintances ever took it the wrong way--hopefully not. Perhaps I'll try from now on to allow myself to be seen.

Looking back on my life, I do have to admit that there are times I regret not having more pictures of me as a teen/College kid with friends & family, as now there's a whole chunk of my life barely documented. Then again, I wasn't doing anything happy or productive or that I deeply wanted in those years, either, so perhaps it's for the best.

 

[Misty Avich]

The main reason why I keep my ASD a secret - I don't like the "you are hurting someone's feelings" lectures. It seems the world correlates autism and lack of empathy like it's a standard fact of autism and then lecture us if we appear to not be pleasing other people - which is why a lot of us end up being people-pleasers.

I refuse to be preached on how to feel or how to think. I have my reasons for feeling embarrassed about ASD, but it doesn't mean I'm ashamed of others with it. It's just how I feel personally about myself and my life circumstances. My mum obviously wasn't ashamed of me having it because she'd tell everyone she met about me having ASD, but at the same time she was, but not ashamed of me, just the fact that I had it and no other child she knew did. It was more like a "why me?" sorrow.

Emotions are complex things, and everyone (both NTs and autistics) need to remember that you can be feeling more than one emotion at the same time. For example, if a person with Alzheimer's was having a tantrum, I'd understand and expect their behaviour and feel very sad for them, but at the same time I'd be feeling a bit timid, scared and unsure of what to do because of sensitivity to emotions in voice, face expressions and body language. Which is actually an example of empathy.

So anyone who lectures me about not caring or understanding other people's feelings will make me want to punch them.

 

[Ronald Zeeman]

I personally do not care what others think of me, none of their business if i'm on the spectrum, either way never got diagnosed, no intention of ever doing so. Frequently go to parties and gatherings just be myself. Helping a friend who I expect is on the spectrum his birthday in a few weeks turns 65 like me has to self catheterize anxious about how he can afford 4 a day without insurance which runs out next day I put together a procedure when I left the hospital ironed all the bugs out. So far not one bladder infection in over 4 years. my knowledge of chemistry and microbiology proved useful.

 

[Hypnalis]

It's good to occasionally consider whether old secrets still need to be kept.
But it's your choice. Don't consider others unless it's clear your secret is causing them actual harm.

You definitely don't have to share that you're ASD with random people.

You have to tell an LTR partner though - that's a special case. And there's a potentially serious downside (relationship implosion) if you don't.

 

[TBRS1]

Meh...

Learn this mantra: "My body, my choice."

Your face does not need to be in a photo if you don't want it there.

Nobody gets to tell you that your personal privacy choices are subject to the approval of anyone else.

 

[Aspychata]

Truthfully, you always need to think of yourself. Friends can come and go. We come in to the world as One, and we leave as One. Give yourself permission to have desires and boundaries. If you don't want to take pictures, then just don't. If you chose not to talk about certain things, just don't. Last l checked, there aren't thought police monitoring us.
Wait, my phone sent me a cryptic message written in donuts, telling me they know where l live. Lol

 

[Ronald Zeeman]

It's good to occasionally consider whether old secrets still need to be kept.
But it's your choice. Don't consider others unless it's clear your secret is causing them actual harm.

You definitely don't have to share that you're ASD with random people.

You have to tell an LTR partner though - that's a special case. And there's a potentially serious downside (relationship implosion) if you don't.

I told my wife what I suspected and the explained the evidence. Made sense to her made sense to me.

 

[Jumpinbare]

Truthfully, you always need to think of yourself. Friends can come and go. We come in to the world as One, and we leave as One. Give yourself permission to have desires and boundaries. If you don't want to take pictures, then just don't. If you chose not to talk about certain things, just don't. Last l checked, there aren't thought police monitoring us.
Wait, my phone sent me a cryptic message written in donuts, telling me they know where l live. Lol

Did you forget your aluminum foil hat AGAIN?

 

[Tom]

What is secret must remain secret. It is unfortunate, but essential, that the NTs know nothing about our plans.

 

[stevens]

I'm glad that I always have been photo-shy. Twenty years ago I realized that, someday, you'd be able to plug somebody's image into a search engine and find every photo they ever appeared in (I work in technology). I'm sure glad today that I won't be found that way.